Interested in finding out more? Here's a Whiteboard animation which explains cystinosis, and all the symptoms and effects very clearly and in simple language. Take a look:View Video Here

We have always taken an active interest in seeking out and funding the best possible research into all aspects of life with Cystinosis. This film is talks about public and patient involvement in research; it is particularly significant for us as this involvement is a major aspect in the HRB Joint Funding Scheme which we have been part of for several years.

Thank you so those who submitted projects for the Seedcorn Funding Programme for 2017. Cystinosis Ireland, partnering with
Cystinosis Research Network (CRN) and Cystinosis Foundation UK (CF UK) have launched this research funding opportunity.

Details of the two projects we are currently funding are available here.

March 2017:

Thank you everyone who supported Anne Marie O'Dowd's petition to request
extended access to Procysbi™ for her son Luke. Follows a statement from Horizon Pharma regarding this:

Thank you to all the families, researchers and clinicians who attended our Family and Scientific workshop weekend 24/25 February.
It was a great success and enjoyed by all.

9th and 10th September 2017

You can donate €4 any time by texting the word MINI to 50300

100% of your donation goes to Cystinosis
Ireland across most network operators. Some operators apply
VAT which means that a minimum of €3.25 goes to Cystinosis Ireland.
Service Providers LIKECHARITY. Helpline 0766805278.